The disease affects one in 15,000 people and results in a feeling of constant hunger because the brain doesn’t get a signal that the belly is full. Other symptoms include difficulty regulating emotions; poor impulse control; a high pain threshold; slow metabolism; cognitive and speech delays; incomplete sexual maturation; and low muscle tone which often leads to low stamina, poor motor skills, and scoliosis (curvature of the spine).

“While the hunger is the most commonly known thing about PWS, our biggest challenge by far is behavioural issues,” Thomas explains. “Greta’s outbursts can be sudden and severe, and our daily lives are frequently dictated by her emotional state at any given time.”

The family of four has made dramatic changes to their lifestyle to accommodate Greta’s needs. They often miss out on family gatherings and other social events because of food issues and anxiety. Hosting playdates and sleepovers in their home for their younger 11-year-old daughter is often impossible. Vacations are planned separately so that Greta can stay home, because the change in locale and routine is too stressful for her. And Thomas has had to find contract work that can be done from home because Greta frequently needs to be picked up from school.

On Sunday, September 11, Thomas and a group of Calgary parents whose children have PWS are hosting the city’s seventh annual One SMALL Step walkathon in Edworthy Park with the goal of raising $50,000 for the Foundation for Prader Willi Research, Canada (FPWR Canada).

The family event is open to all and takes place from 10:00 am to 12:30 pm. It includes an easy, 2-km walk on a paved path, prize draws, music, and children’s entertainment. For information or to register, visit www.onesmallstep.fpwr.org.